NHSendo has called my p. endo a Charlatan becau... - Thyroid UK

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NHSendo has called my p. endo a Charlatan because he advised I take T3

smilingjane profile image
β€’77 Replies

Morning everybody

I had a routine follow up call from my NHS endo. I should have cancelled this because I am now seeing a private endo.

Forgot all about it though.

He asked how I was, and after hearing that I was now seeing a different endo asked how that is going. I mentioned that new endo had prescribed T3 due to my low T4 T3 conversion rates.

He then stated that any perceived improved wellbeing was due to the placebo effect. I wasnt ready for the call and didnt have my usual notes in front of me do was unable to articulate all the info I have learned on this site + over the last couple of years.

He then called my p. endo a charlatan and quoted papers that evidenced that T3 does not make a difference used alongside T4.

Felt a little upset after the call and started to doubt myself. I have a pile of printouts stating the pro T3 case. They are in a jiggerly mess and I am not able to collate and collect documents to send to him by email. My CFS is pretty poor Atm.

My call for help is:

Does anyone have just one or two documents or papers that succinctly state that T3 as well as T4 is important to regain full thyroid health so that I can send them on to my now ex NHS endo.

What is also unsettling is that this consultant appears to be highly regarded.

I am feeling tired and confused by ut all

Thank you for any help

Jane πŸ€”

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helvella profile image
helvellaAdministratorThyroid UK

I'd ask your NHS endo for details of the papers he quoted.

Then you will know the basis on which he calls the other endo a charlatan.

I suspect that an endo who really believes another endo is a charlatan should report them to the appropriate bodies. Failing to report a known charlatan would appear to me to be a special form of unethical behaviour. After all, it ends up blaming you for seeing the other endo. Back to the patient blame game.

(Isn't failure to report out of control doctors a major issue? Like Ian Paterson.

Ian Paterson inquiry: more than 1,000 patients had needless operations

Report says hospitals displayed wilful blindness to damaging operations on hundreds of patients

theguardian.com/society/202... )

smilingjane profile image
smilingjane in reply to helvella

Yes absolutely, thank you Helvella.

I will construct an email later when my head is clearer.

😊πŸ’₯πŸ’₯

Thyb profile image
Thyb in reply to helvella

As my Dad always said 'The Graveyards are full of Drs mistakes'.....Unfortunately, we have to look and read research we feel relevant, and listen to our bodies and just about treat ourselves.

Private blood tests is one of the many methods I think many use.

I trust no GP/Consultant, but, as we 'need' them I go for at least 2-3 opinions...e.g. recently seen '3rd' 'Spine Consultant'.

Awaiting 2nd Dexa Scan.

Awaiting an appointment for another Rheumatologist as I complained about his 'abusive mannerisms', and 'talking over/at me' instead of to me.

Momentarily, waiting for another GP phone call to ask him to chase up some appmnts for me etc etc

Awaiting phone call from 'Another Endo', looking for 'similarities' in their diagnoses...OMG the differences are quite something.....

Paterson as guilty as Shipman, Bev Allitt and all the undoubtedley others whom haven't 'come to light yet'.

Prompted a rant!!

smilingjane profile image
smilingjane in reply to Thyb

Thanks Thyb

Yes it is mad that we have such inconsistencies when given diognosiseas. I am sorry you had a rude, patronising s***t rheumatoligist.

The idea of getting more than one opinion is the way forward.

Thanks for your input

Jane 😊

Shield-Maiden profile image
Shield-Maiden in reply to smilingjane

Sad, but unfortunately, very true.

You're taking the correct path, getting rid of the NHS so-called Specialist.

SeasideSusie profile image
SeasideSusieRemembering

smilingjane

Does anyone have just one or two documents or papers that succinctly state that T3 as well as T4 is important to regain full thyroid health so that I can send them on to my now ex NHS endo.

How do you feel? That's the important thing. If you feel better on combination replacement then you know it works for you.

As he's your ex-endo I would simply forget about it, you wont convince him whatever evidence you supply, his mind is made up and it's doubtful he'll change it.

smilingjane profile image
smilingjane in reply to SeasideSusie

Thank you Seaside Susie

Yep I dont feel he would read anythingi sent across. Thing is though ... you never know, he might .. and if others do the same?

I dont particularly feel hugely better. Although I am currently having a couple of good days a week. More than before. And, my T3 levels are in the upper range.

So that has to be good. Upped the R3 from 10 to 15 mls daily several weeks ago.

P. endo has referred me on to a CFS/ME specialist in London.

At least I am being listened to now and although the human body, all bodies ..... are all so hugely complex evidenced research is constantly changing as is awareness ...... wouldn't like to be in a medics shoes trying to keep up!!

I do wish there was more honesty and transparency.

Thanks for all of your advice

Always

Jane 😊

Shield-Maiden profile image
Shield-Maiden in reply to SeasideSusie

I agree...he sounds arrogant, and, probably won't listen to anyone.

Lalatoot profile image
Lalatoot

Jane, What matters is that you are now getting the treatment you need. There are many T3 sceptics out there. Sending the pro-T3 evidence to one of them would be a waste of your energy. His mind is closed.

On here we know better and the evidence of so many of us speaks for itself.

Don't doubt what you are doing. Move on and count that endo as yet another one who doesn't know it all and is not prepared to have an open mind. He may be highly regarded by some but 'in the world of the blind the one-eyed man is king'.

smilingjane profile image
smilingjane in reply to Lalatoot

Ha! love it

Well theres one more oneyed man I can wave tarra to

Thanks Lala

Jane 😊

penny profile image
penny in reply to Lalatoot

Have you read the H G Wells short story β€˜The Country of the Blind”?

smilingjane profile image
smilingjane in reply to penny

Will look that up!

Shield-Maiden profile image
Shield-Maiden in reply to Lalatoot

Nicely said...written 🌺

fuchsia-pink profile image
fuchsia-pink

Strange, isn't it ... the endos who don't "believe" in T3 refuse to conduct a trial - presumably in case it disproves their prejudices - and dismiss all of us that have found lio helpful as somehow deluded, confused or suffering from a placebo effect,

But, I ask, what's wrong with a placebo effect that really works anyway :)

ps NHS endo sounds a right wally. I wouldn't waste any time on him x

in reply to fuchsia-pink

I agree! I don't understand why they're so disdainful of placebo effects. The purpose of medicine is to make people well, or relieve their symptoms.

If that happens via placebo or homeopathy, acupuncture, meditation, tai chi, or some lotion or potion that's not scientifically proven, then why is it wrong?

helvella profile image
helvellaAdministratorThyroid UK in reply to fuchsia-pink

If T3 were just a placebo, why would they worry so much about the possibility of taking too much? :-)

fuchsia-pink profile image
fuchsia-pink in reply to helvella

Clearly you can have too much of a good thing, even if you only think it's good :)

smilingjane profile image
smilingjane in reply to fuchsia-pink

Thanks fusia

He is!

Though interestingly someone on this site recommended him to another.

I PM ddd them to mention my experience

πŸ˜‰

Cooper27 profile image
Cooper27

Make sure the papers you send him are of suitable quality. Last week I had an appointment with a private consultant about my chronic pain condition. I took a study that was carried out on 50 women, where every participant reported improvement in pain (from average pain score of 7.5 to average pain score of 2.5). The doctor dismissed my study, because it didn't have a control group and because in her opinion that meant every participant could have succumbed to placebo effect.

Double blind, control group studies are your best bet.

smilingjane profile image
smilingjane in reply to Cooper27

Def Cooper27

Thanks for that. Will take on bourd for future ref

😊

Quasarlis profile image
Quasarlis

Demand your NHS so called β€˜Endo’ to put his β€˜thoughts’ in writting to you, I’d also put in a complaint about him regarding his conduct during the phone call and also tell your private endo of his conduct .. Let’s see how he reacts then.

When I went to see a NHS endo I was on 250mg Levo and feeling like death!! I’d recently had a Blue Horizons Thyroid + 12 private blood test, it showed my TSH to be high and above range, ALSO showed my FT4 to be high and above range, FT3 to be low. Also showed me to be loaded with Hashimoto’s antibodies and RT3. I also have a bad conversion ratio. What was happening is most of the T4 was being converted into RT3, blocking the uptake of any T3 I did have, leaving me in a hypo state, my TSH would go up, fed me more T4 and the spiral continued. I gave him the results from BH and he totally and utterly ignored them stating β€˜Some assays are different’, span me an absolute load of S**t and so on! It’s my opinion the a NHS specialist is there to help their patients and to explore ALL evidence relating to their condition, NOT to deliberately dismiss it without consideration because it suits them or if they were to investigate it, it may suggest T3 is warranted, they would be pressured by the NHS not supply it .. All the little coward was interested in was his ridiculous NHS salary and not the well being of his patients ... The only thing I regret is not knocking the lieing little coward on his a**e and happily settling for the consequences.

Don’t let these NHS β€˜charlatans’ bully you, tell them what you think etc. My GP have been told that I’m not interested in their blinkered/uneducated opinion of my condition, I’ll do my blood tests, take my Levo along side my T3 and I WILL manage any changes, not them as all they have ever done is lied to me and made my condition far worse over the years. They now know better then to try and feed me rubbish!!

Good luck with it all ... πŸ‘ŠπŸ»πŸ‘ŠπŸ»

smilingjane profile image
smilingjane in reply to Quasarlis

Thanks Quasarlis

You have certainly been through it πŸ€”

I hadn't thought of putting a complaint in. Never done anything like that before. We are so use to being taught that doctors are always right. And accepting unacceptable behaviour.

I am going to think about that

πŸ˜‰

Lora7again profile image
Lora7again

I would tell your private Endocrinologist what your ex-NHS Endocrinologist has said about him. I think it is very unprofessional to talk about another doctor like this. Also I think it sounds a bit like sour grapes because your private Endocrinologist is helping you to feel well and your ex-Endocrinologist had failed to do so.

smilingjane profile image
smilingjane in reply to Lora7again

Hi Lora

I know maybe I should but then again what point would it serve?

But certainly very unproffesional.

Maybe a complaint about the endo might go in. Having a think about that one.

😏

Lora7again profile image
Lora7again in reply to smilingjane

I think your private Endo might want to take it further because they are questioning him and calling him a "Charlatan" which is quite insulting in my opinion.

en.wikipedia.org/wiki/Charl...

smilingjane profile image
smilingjane in reply to Lora7again

You are right it 'b*******l is

🀨

Hillwoman profile image
Hillwoman

I agree with Lora7again's comment that your NHS endo behaved in a very unprofessional manner.

The placebo defence is an easy one for any doctor to throw about when they're challenged. But a T3 placebo effect could only be in operation in these circumstances if there were no possibility of you suffering the effects of low T3. Clearly, that does not apply to anyone with diagnosed hypothyroidism.

smilingjane profile image
smilingjane in reply to Hillwoman

Absolutely

Thanks Hillwoman

πŸ€”

humanbean profile image
humanbean

This doesn't answer your question, it's just a bit of a waffle.

I have always wondered about medical attitudes to T3. There are certain things that doctors shouldn't be able to dispute, if they really knew the basics, but many of them don't know them. And these are some of the basics...

1) Everyone has T3 in their body, including endocrinologists (although I do wonder if they have enough in their brains).

2) Every cell in the human body needs T3 to function correctly.

3) If a cell has less T3 than it needs to function correctly then it won't work to its optimal capacity.

4) According to the Society of Endocrinology website "You and Your Hormones"

Triiodothyronine is a thyroid hormone that plays vital roles in the body's metabolic rate, heart and digestive functions, muscle control, brain development and function, and the maintenance of bones.

Source : yourhormones.info/hormones/...

Triiodothyronine is the official name of T3 as a hormone that is created by the body. Liothyronine is the name used for T3 in a pill.

5) If you compare the above with what the same website says about thyroxine...

Thyroxine is the main hormone secreted into the bloodstream by the thyroid gland. It is the inactive form and most of it is converted to an active form called triiodothyronine by organs such as the liver and kidneys. Thyroid hormones play vital roles in regulating the body’s metabolic rate, heart and digestive functions, muscle control, brain development and maintenance of bones.

Source : yourhormones.info/hormones/...

Thyroxine is the official name of T4 as a hormone that is created by the body. Levothyroxine is the name used for T4 in a pill.

6) Note the difference between :

From 4 above - Triiodothyronine is a thyroid hormone that plays vital roles in the body's metabolic rate, heart and digestive functions, muscle control, brain development and function, and the maintenance of bones.

From 5 above - Thyroid hormones play vital roles in regulating the body’s metabolic rate, heart and digestive functions, muscle control, brain development and maintenance of bones.

So, when they are talking about T3 they specify that it plays a vital role in the body's metabolic rate etc, but when they talk about T4 they use the generic term "Thyroid hormones". They can't say that T4 plays a vital role in regulating the body's metabolic rate etc because it isn't true. It has to be converted to T3 to do that.

7) So, doctors prescribe T4 to people and just assume that everyone can convert T4 to T3, and they deny that anyone could ever have a problem because they've been taught that only T4 matters - and it isn't even the active hormone!

Many members of this website know that conversion of T4 to T3 can be affected by all sorts of things including, but not limited to - nutrient levels, gut health, adrenal health and cortisol output, liver and kidney health, sex hormone levels. That some doctors don't even know the importance of T3 is absolutely shocking, but is a common problem for patients.

smilingjane profile image
smilingjane in reply to humanbean

Humanbean

Thank you for your insightful 'waffle' ☺

I will re-read this when my afternoon dose of T3 kicks in. But again you are highlighting inconsistencies in knowledge ...... Sadly those that are supposed to be helping is just dont know the facts.

It beggars belief.

Thank you for all of this.

😊

Barrister profile image
Barrister

So unprofessional! Usually doctors are very diplomatic when talking about other doctors. Perhaps your NHS endo feels threatened.

smilingjane profile image
smilingjane in reply to Barrister

Maybe Barrister.

Also there were two med students in the room. This guy is very arrogant. Hopefully they will see through him Maybe the will consider their own research...

Thanks for your input.

😊

diogenes profile image
diogenesRemembering

There are a lot of papers at least acknowledging the need for FT3 measurements as well as TSH and FT4 to monitor patients on T4 mono therapy or T4/T3 combination therapy. A starter is:

Time for a reassessment of the treatment of hypothyroidism

April 2019BMC Endocrine Disorders 19(1)

DOI: 10.1186/s12902-019-0365-4

John Edward M Midgley, Anthony D Toft, Rolf Larisch, Rudolf Hoermann, Johannes W Dietrich

One of the authors (Toft) is sympathetic to the need for individualised therapy rather t han blanket T4 only. The paper is open access.

humanbean profile image
humanbean in reply to diogenes

Link for this paper :

bmcendocrdisord.biomedcentr...

smilingjane profile image
smilingjane in reply to humanbean

Thank you HB

😊

smilingjane profile image
smilingjane in reply to diogenes

Thanks for this diogenes.

I may send him this link. You never know?

😏

NWA6 profile image
NWA6

Lol this gave me a good laugh this afternoon! Obviously not funnny for you and my laughter is indignation at the NHS Endo which is so bloody typical throughout our country πŸ€¦β€β™€οΈ

So your β€˜placebo’ is working, so what’s he worried about? Placebos don’t cause harm. His ego is dented is more like it.

I take T3, there’s no bloody way it’s a placebo! Grrrrrrr

smilingjane profile image
smilingjane in reply to NWA6

Ha!

Yes seems to be working!

Thanks NWA6

smilingjane profile image
smilingjane in reply to NWA6

Ha! I have just had s look back through the thread and had a bit of a giggle.

Obviously it is serious but always good to see the humorous side!!

☺☺

smilingjane profile image
smilingjane

Thank you everybody for your insightful comments.

You have been a big help .. as always.

😊

ThaiDogRescue profile image
ThaiDogRescue

even if it was a placebo effect ( which I think every one here agrees it's not ) the end result is you feel better and that is a what actually matters to patients.

smilingjane profile image
smilingjane in reply to ThaiDogRescue

Absolutely

πŸ˜‰

Framboise profile image
Framboise

Such a comment about your private endocrinologist is so arrogant and unprofessional of the NHS one. Did you by any chance tell him the name of the private one?

Incidentally I see you mentioned that two medical students were in the room, which could explain part of this man's attitude. The nastiest, rudest doctor I've ever seen was a Professor at one of the London hospitals who had three medical students with him, all looking cowed. He shut the door on my husband telling me that I was old enough to be on my own, he had several asides and laughs with his side-kick, and he spoke to the students in a denigrating and really superior way, then he spoke the same way to me. I didn't ever go back, but later heard that his theories (this wasn't to do with endocrinology) had been disproved and he'd "retired". I hadn't been asked if I minded the students being there - were you asked for your permission to have students listening in?

Alanna012 profile image
Alanna012 in reply to Framboise

Oh god that sounds awful! I wonder if its the same consultant who started by announcing that he 'was the foremost expert in this or any other hospital' then asked me about my marital history, my parents relationship and how much I earned before telling me that my acid reflux was due to 'the stress of being single, poor and my parents divorce as a child and all in my head' then said 'you see' when I challenged him.

Looking back I really do kick myself for not reporting him immediately. But I was far too upset to think clearly at the time!

smilingjane profile image
smilingjane in reply to Alanna012

Alanna012

How inappropriate and judgmental.

I k ow what you mean about having a rubbish consultation and doing nothing after. I feel a bit like that. I havent decided what to do yet.

If you PM me re who your consultant was? could be the same guy But then it seems its s common issue on here.

Are you sorted now?

πŸ€”

Alanna012 profile image
Alanna012 in reply to smilingjane

Oh not sorted. Unbeknowest to me at the time many of my gut issues were due to slow gut motility caused by ineffectively treated hashis. At that point I was having all the myriad symptoms without anyone explaining what was happening so was treating them separately. unless I am super careful with my diet I get stuck with the reflux again. That means no grains at all, no gluten, cutting sugar down to the bare minimum, eating as much salads and steamed veg as possible etc. I fall off the wagon all the time and end up feeling rotten. But even with all of that work I can still require frequent drinks of senna or laxatives at times or the acid returns!

smilingjane profile image
smilingjane in reply to Alanna012

My diet should be that. It's so hard though. And to get the calories needed .....

Atm cause of zilch appetite I just have tinned rice pudding, prunes and g biscuits. Very poor diet.

Have you a good endo now?

Also I have the powered stuff you put in water, the kind of laxative that draws water from outside the bowel to soften stools. It seems to work, but you worry about ling tern effects of laxatives ...

Alanna012 profile image
Alanna012 in reply to smilingjane

No no endo! Can't afford one. Had a big argument with my doctor a few weeks ago as I stopped my meds and he eventually agreed that if I take my levo again and still feel rubbish he will refer me! I had asked before with different doctors and got nowhere. Because my TSH was rising to the thirties and I told him I was desperate he agreed. It remains to be seen if he will follow through though.

I felt guilty for not being nice but I have no idea why when I have been dismissed and just left to suffer for so long.

Re: the diet. Yes it is hard to keep up. Especially financially cheaper food is more easily available in higher quantities and what with Covid I'm cash strapped plus messing with my levo didn't help.

Take out is also more difficult. Most fast food is no good. I love Korean food but even that has soy, rice, etc. It is tough but I guess how much do I want to feel better? I also do the psysilum(?) Husk thing in water, hate taking it but it helps.

Creamy rice pudding sounds great! I made a victoria sponge on Wednesday and have no one to blame but myself for the fallout.

Amino acids help a lot though so maybe try an amino acid formula there's a good one by vitabiotics. Bit pricey though x

Lora7again profile image
Lora7again in reply to Alanna012

My Endocrinologist thought he was an expert on thyroid disease and he had studied at Oxford and wrote papers about it. He then offered me counseling for feeling so ill with very low T4 and T3 and a high TSH. I then walked out of his clinic never to return. I requested his written notes from 10 years ago and he has written "anxious" and "depressed" on them. Of course I was anxious and depressed because I felt so ill and could hardly get out of bed every day. I don't think counseling would have helped me and I would have bored the counselor to death talking about my hair loss and my nails dropping off etc.

smilingjane profile image
smilingjane in reply to Lora7again

hi Lora

Thinking of requesting my back notes. Do I have to do this through my GP?

πŸ€”

Lora7again profile image
Lora7again in reply to smilingjane

I requested mine from the hospital and I was sent a form which I had to complete. This was sent to me via email and I returned it with a copy of my passport. After a couple of weeks I received a padded envelope containing a copy of my Endo's notes and a disc of my ultrasound.

Here is a link

england.nhs.uk/contact-us/h...

smilingjane profile image
smilingjane in reply to Lora7again

Ah thanks for that.

I feel like doing it for the last 30 years , (hashish diognosis) Do you think they would do that?

Lora7again profile image
Lora7again in reply to smilingjane

I think you can go back as far as they have the records I only went back 10 because that was when I was first taken ill. I actually used to work in Medical Records and they only archive results so many years after treatment because of the limitation act just incase the patient takes legal action. I actually used to stick black tape on the deceased files which was a very depressing job.

tattybogle profile image
tattybogle in reply to smilingjane

"I feel like doing it for the last 30 years , (hashish diognosis) "

I really hope that 'Hashish' is a typo ! lol. you don't get a diagnosis for that , you get a fine :)

Seriously though, about the past records;

I used a SAR (Subject Access Request) form from the Gp's reception to request all my records from 1990 and they actually sent everything from about 1988., put on a disc.

I think if you're going to do it , you might as well get everything. It''s very interesting if nothing else, (and they can get awkward about it if you need to ask for something else after the first request)

Be prepared to be angry for a couple of months once you read some of the comments though, but it does pass :) I got mine at the end of last year.

As for your Endo calling anything to do with T3 a placebo effect...... they can't have their cake and eat it......... either it IS a really powerful and potentially dangerous hormone that we all want to get our hands on just to feel the 'buzz', and they don't want to prescribe it for that reason...... or it's NOT, in which case there would be no harm in prescribing it to all of us 'moaning minnies' and the placebo effect would shut us up.

Even though you are not sure T3 is helping yet , you are going about it in a perfectly safe and sensible way, it's doing no harm and it's 'early days' i think. It makes sense to me that it took us a long time to get ill, and the body compensates and adjusts during that time, so it would make sense that finding the best replacement doses and allowing the body to get used to functioning better on them will take a long time too.

First endo has had his chance to help you and not got any further improvement , placebo or otherwise. He just can't summon the humility to admit that some other way might just have a better outcome.

I hope you do improve more, but don't let him make you doubt your own sensible decisions, it's his ego he's looking after at the moment , not your health..

smilingjane profile image
smilingjane in reply to tattybogle

Ah Tatty

Thank you so much for this message. It has cheered me when felt particularly down today. Went into town just 2 bus stops to meet my family. One cuppa and had to get taxi home.

Aching all over and hardly able to walk. Chronic fatigue. Going to stop trying to push myself doing stuff. Seeing a CFS/ME specialist in London soon.. I've checked him out.

Defo think about getting my records

Thanks for the top tip on that.

Now about this Hashish business ....

πŸ˜‰

tattybogle profile image
tattybogle in reply to smilingjane

Glad i cheered you up.... Keep making the effort to see people , just accept that you 're better to get the taxi there so you might enjoy it for longer before you turn into a pumpkin, and don't be ashamed to lean on someone for a lift home if you can't afford a taxi back. :)

It's easy to start thinking 'what's the point' in socialising , but your friends still want you even if you're sitting in the corner rather than swinging from the lampshades. (it's a hashish thing !)

rubbish tho' isn't it , a bit of an errand to town, a bit of social interaction, and we end up looking like someone who's just fallen across the finishing line of the London marathon.

At least you know you're not alone, there's loads of us.

Its just hard that no one out there 'gets it'.... an lady once said to me " but you look so well, and whenever i see you you're out "........... well, Duh ! she's not going to be able to see me inside on the sofa for the next two days is she ... silly mare.

smilingjane profile image
smilingjane in reply to tattybogle

Ha! classic. I wonder if people realise the frustration they cause coming out with stuff like that ... It's almost like your being discredited.

Thanks again 😚

Is your weekend tumbling aling okay?

tattybogle profile image
tattybogle in reply to smilingjane

Yeah , i'm having a wild time !.... looking down the damp garden path at a huge long pile of cut grass that needs taking to the compost heap........ it's been sat there for a couple of weeks since i overdid myself cutting the lawn........ it's all excitement here. But none of the right sort of 'grass' so no swinging on the lampshades here :)

smilingjane profile image
smilingjane in reply to tattybogle

Ha!

The wildlife will be loving your pile even though its temporary.

Hope you gather your strength and dont forget the most important thing. Rest, rest and rest πŸ™

Alanna012 profile image
Alanna012 in reply to Lora7again

How ridiculous! It makes you feel terrible when you think you will be listened to but are told it is your mental health that is the problem for not being happy sick.

I actually think I should look at my notes cause I'm sure I also have anxious written on them.

The thing I never understand is anxiety, low mood and depression are well documented expressions of Hashimotos, but instead of thinking 'well maybe this person is not adequately treated' these 'experts' always seem to think the direction of the relationship is the other way around!

Lora7again profile image
Lora7again in reply to Alanna012

I also have read my GP records and one of the GPs has written "delusional" on my records. This was when I was suffering from untreated Graves' and I had been going back and forth for over 2 years. The GPs I saw thought I was suffering from the menopause and I was given all kinds of tests including 2 uterus biopsies and a cervix biopsy. None of the doctors spotted my TSH was 0.002 and suppressed. As you can imagine after being left for so long I looked and felt awful. My head was balding, some of my nails had dropped off and I was a size 8. My family thought I had undiagnosed cancer at one time. I even paid to see a dermatologist who charged me Β£150 to tell me I had female pattern balding. I feel like going back and showing her she was wrong and I still have a head full of hair after 10 years.

Alanna012 profile image
Alanna012 in reply to Lora7again

That is appalling. Why did no one think to do a thyroid panel??

On hair: Mine dropped out in handfuls when I was in my early twenties. Naively I went to a charlaton trichologist in Harley street (had no idea anyone could set themselves up in Harley street if they really want) and after listening to my problems she didn't even test my blood, not even for iron or ferritin, and dismissed my chronically heavy periods as a factor. She literally ran a comb through my hair, said 'do you perm it?' then said I was lucky I still had hair as I had more than her patients and persuaded me to buy Β£250 worth of hair products with menthol and olive oil in (common on the shelves now but rare back then) to stimulate my scalp. She even admitted to never ever seeing her patients again but just selling them her stuffπŸ˜„. I actually find it funny now.

But I saw a brilliant dermatologist at the Medical Chambers in London a couple years ago and she tested my bloods for almost everything then said I should change my doctor as my problems were due to thyroiditis and there was nothing she could do until it was dealt with. She was very sympathetic and understanding, said many doctors are not trained in thyroid management and identified the problem in minutes.

Luck of the draw sometimes! It really shouldn't be that way though should it?

Lora7again profile image
Lora7again in reply to Alanna012

The dermatologist told me to use Regaine and I actually purchased some but I threw it away when I realised it was my thyroid causing the hair loss.

Framboise profile image
Framboise in reply to Alanna012

The one I saw who was so appalling was a Professor of dentistry at the Eastman years ago, he was totally nuts and so very arrogant! But I also once went to an aged endocrinologist in Harley Street (I too had no idea anyone could set themselves up there!) who told me there was nothing wrong according to my test results then wrote to my GP that he wondered if my symptoms were an "escape from reality", to which my GP wrote "Agree" in the margin then gave me a copy of the letter! That GP and her husband both retired and bought a house at the end of my road and I have to drive past every time I go anywhere :(

I hate the way some of them attribute everything to background and life! That was so disgusting of your consultant to make such comments, but I understand perfectly (and so too do they probably) that we get too overwhelmed and exhausted to be able to complain logically at the time. Does it do any good even if we do though? One friend, whose life was almost ruined by a surgeon who made two mistakes and refused to acknowledge them, sued him - he then "lost" her hospital notes as did the hospital, how convenient! He also left all her solicitor's questions unanswered until the last possible moment, then replied with questions of his own. It went on for years and finally my friend had to settle out of court, so the surgeon is still practising!

smilingjane profile image
smilingjane in reply to Framboise

How appalling to write that about you in that way. Just because they cant work out what's going on, or dont give us the time 🀨

I have a feeling that medics are taught that they are special at med school and really do go on to acquire an arrogance and ego that harms their 'bedside manner'. And in turn ability to provide an effective service.

The experience I have had with many is poor and unproductive. I have often felt looked down on. And sexism is rife. Had my son at 30 and was very ill or a year before diognosed with H. During that year I was labelled with dep, ME and a lot of other things. In the end I could no longer look after my baby and Ss were called in to offer help.

One simple blood test would have brought my illness to light. But no, shes tired and weak because she's just had a baby.

Unbelievable...

I wonder if I can get those GP records going back to 1989?

Do you think?

Alanna012 profile image
Alanna012 in reply to smilingjane

I can relate to everything you've written, even the bit about being run down and ill prior to and after giving birth. In my case I turned into a walking zombie from extreme exhaustion and I ended up begging for help and the doctor said SS would not help me in the long run. However simply wrote PND , offered ADs (which I wouldn't take as BF) and did no blood tests other than for iron and an eventual prescription for strong dose ferrous sulphate. It never occurred to them that I might just be suffering a bit more extreme than normal and something physical might be going on. Sorry you had that experience!

Yes many consults do really think they are the creme de la creme, but have zero patient skills or curiousity even.

I have heard from several Americans I've spoken to, that they think our consultants are especially bullish and in their opinion it's because we don't pay, we have G.Ps as middle men and drug dispensing is managed more tightly due to funds.

With regards to notes, I thought there was some new legislation that means you are entitled to them all, but how far back I don't know

smilingjane profile image
smilingjane in reply to Alanna012

Allanna I am so sorry you went through a similar thing to me. Just at that very important time of needing to bond with and respond to your baby ... I didnt bond with mt baby for two years and it has certainly affected him.

I think that's a key point about us not paying the medics (directly anyway)

With private doctors we are very much customers and customer service has to be paramount if they want us to recommend them.

I think I will go for the notes. Need to be a little stronger first 🀨

Thanks for all your input 😊

Alanna012 profile image
Alanna012 in reply to Framboise

They really shouldn't be allowed to write things like that, that is terrible and how awful that the GP now lives on your street! Although, if its any consolation, I doubt they remember half the notes they write.

Yes it can require a lot of confidence to challenge bad practice at the time due to the power differential, and uncertainty about what is wrong with you and the disappointment of concerns being dismissed again by someone you are trained to see as an authority and expert and who you expect and hope to help you.

Your friends story is wrong on every level!

MissGrace profile image
MissGrace

Charlatan? Ha - takes one to know one! How dare he! Nothing so sad as a closed mind in a scientist. If T3 was tuppence and T4 could only be bought with gold bullion bet they’d be throwing T3 at us...

I wish you best of luck with your journey to health and I’m pleased you now have a wider range of possible medications open to you. Your NHS endo certainly wasn’t helping was he? He had his chance and blew it. Arrogant t*ss*r. πŸ€ΈπŸΏβ€β™€οΈπŸ₯›

smilingjane profile image
smilingjane in reply to MissGrace

Thanks Missgrace

You are right a completely arrogant t****r πŸ˜‰

Luckily I had choices. Not everyone has though

Hope alls well with you?

😊

Zazbag profile image
Zazbag

This is absolute tripe!! Since adding T3:

My menorrhagia has stopped, periods are normal/light

My PMDD has stopped

My sleeping has improved

I've lost weight

I have mental clarity and focus

I have a good mood and am able to handle stress

My eyebrows have stopped growing white hairs (I'm 33)

I can recover from exercise again

My red blood cell count is the highest I've ever seen it after years of it being abnormally low

My mean corpuscular volume and haemoglobin are normal again for the time in years

My ferritin shot up by 21 in one month - it took 5 months for the same increase before T3

My abnormal serum creatinine (kidney function) has completely normalised

My puffy face has gone away

This isn't placebo effect. These endos should be sued for medical negligence.

smilingjane profile image
smilingjane in reply to Zazbag

Hi Zazbag

Eloquently put!

Thank you for yet more of the validation I needed .

Pleased you have had such a great recovery 😊😊

Zazbag profile image
Zazbag in reply to smilingjane

Thank you so much ❀️

Shield-Maiden profile image
Shield-Maiden

Hi Jane,

I am sorry that you had to endure that, but it does not surprise me (I could tell three horror stories, about 3 Endo's, in 2 countries...so the problem seems to be a global issue).

You have had some sound advice.

I had every right to complain, about each doctor/endo, but I didn't, because I was too busy, and, I felt pretty unwell, due to my health /illnesses.

Obviously, it's entirely up to you, but I would recommend informing your GP verbally, about the Endo you saw, with the concern that perhaps your GP ought not to refer any more patients to that particular doctor (put it in writing, to your GP even).

That, if taken onboard, by your GP, should impact that doctor's income, if they get paid per consultation. So, hit him where it hurts, in his pocket.

Just a thought.

I am pleased that you have gone privately; well done.

And, lastly....A Resounding YES!

You do need T3 and T4, with your Thyroid health issues (as I do...I went 2 years without T3, and it was unbearable).

Take care β™‘

smilingjane profile image
smilingjane in reply to Shield-Maiden

Ah thank you Shield-Maidan

I know that when my GP refers me on that it comes out of the practice budget. As far as I am aware the NHS consultants referred to get a fixed salary (might be wrong) , So s**t endo wouldn't be affected if GP referred to another from that department.

Except that I dont think they can choose which endo to refer to which suggests that either my GP would be obliged to put a complaint in or wouldn't and would continue to refer patients to the department with future patients potentially getting a poor service.

The more I have read over the last day ie so the more I think that I should be putting a complaint and copying my GP in.

I hope that you are managing to trug along and are feeling a bit better and stronger?

Take care

Jane 😊

Shield-Maiden profile image
Shield-Maiden in reply to smilingjane

Hi Jane,

That makes a lot of sense; I have not lived in the UK for quite a few years now; it's so silly when fees are paid for, out of the GP's budgets.

I think that your plan to complain, and, to make it official, and to send a copy to your GP, is a very good idea, well done.

Isn't it awful, when these arrogant unpleasant doctors get under our skin, and upset us; clearly these people became doctors for the wrong reasons.

Thank you, I am feeling better now. I actually have an Endo appointment tomorrow, which will most likely be a waste of time, but I need to ask for a (an) MRI, to see if my tumour has shrunk, otherwise I wouldn't bother going, I would have cancelled already. I buy my own Thyroid meds, so luckily for me, the Endo can't dictate what I take, Thyroid-wise; which is a HUGE relief.

Please let us all know how you get along; please feel free to PM me, if that works better for you.

Good luck, not that you need it.

Take care β™‘ (Tracy)

smilingjane profile image
smilingjane in reply to Shield-Maiden

Thanks for that Tracy

So reaffirming to have the wonderful folk on this site helping, advising and being such lovley people.

I do hope that your endo visit has some positives about it tomorrow.

I will PM you. I sent an email to my T3 (back up supplier in case things fall short with NHS supply). And no response. Wondering if she has stopped trading fir some reason 😏

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